Behcet's Syndrome Society
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how do I claim any money/benefits as ive left my job due to my illness

17months have passed and to be honest im no further forward, still having ulcers in mouth and down below but not often down below, my bones ache, I suffer from headaches, and to be truthful ive just finished my job because I couldn't take it any longer, I have a sick note that says I have behcets disease but no one has actually confirmed it to me, last week I had chest xrays and hands and feet xrayed due to my aches, I go back to see my dermatologist/rhumetologist and gynaecologist in jan and have blood test every fortnight as im on dapsone and prednisolone when I have flair ups, can anyone advise on what I need to do? many thanks

4 Replies

Hi, Sounds like you are in a pretty bad place at the moment!!

Sorry if I am giving you false info.....I'm no expert by any means where claiming benefits is concerned I'm afraid, but I do know that the old DLA has been changed to something called PIP, and from what I can make out it is a lot harder to claim than the old DLA.

Before I was properly diagnosed and managed with meds I used to suffer really badly with mouth ulcers and ones down below. I would get migraines that would last for days at a time and bowel problems that were just unreal.

Thankfully I have a fantastic G.P and the team I am under at the hospital are good if I get to see certain consultants. My last visit I saw what I can only imagine was some student straight out of med school on a placement. Anyway that is another story and I don't want to bore you with that....

Sounds to me like you are not yet being managed correctly with the right meds. I take a whole load of meds which keep my symptoms at a manageable level for the most part. Don't get me wrong not every day is a good one and sometimes there are long periods where more days seem to be bad than good, but on the whole life is much easier than it was before I got diagnosed.

My advice is get on your consultants case and see if you can be seen sooner than January. January may only be a few months away, but starting on treatment that will help you a few months earlier might just make a whole world of difference to you hun.

On the benefits side there is a whole load of info online in the Behcets Syndrome Society Website, under the information dropdown.

Hope this helps.



x x


Hi there

Sorry to here your suffering it's really hard with this condition most of the time so I feel for you. As Clare said you need a diagnosis to get the right treatment

As for benefits you need to make a claim for ESA Employment and support allowance which replaces income support/incapacity benefits you can do this on line or by phone. Also as Clare said you can also make a claim for PIP Personal independence payment.

Good luck and take care

Sue x


Hi can you tell me if you can claim these if your married pls? X


Hi there

Yes of course you can any or both of those two benefits.

Take care sue x


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